4th European Symposium on Rare Anaemias

3rd Bulgarian Symposium of Thalassaemia patients and professionals

2011 November, 19th - 20th

Sofia (Bulgaria)

The 4th European Symposium on Rare Anaemias is an activity of the ENERCA project which aims to disseminate up-to-date knowledge and increase the public awareness about congenital and rare anaemias. As in other rare diseases, the recognition of expert centres, promotion of best practices and education and training of multidisciplinary health professionals teams are basic in order to serve patient needs, both in diagnosis and case management. Patients are always at the heart of ENERCA policies, like those of the Thalassaemia International Federation (TIF), Thalassaemic’s Organization in Bulgaria (TOB) and the Spanish group ALHETA.

In this respect, and specifically in the context of the 4th European Symposium on Rare Anaemias, the three organisations (ENERCA, TIF and TOB) have collaborated in setting up the 3rd Bulgarian Symposium of Thalassaemia patients and professionals in Sofia, with the scientific support of ENERCA and integrated in the framework of the 4th European Symposium on Rare Anaemias. The program includes an interactive session with patient panellists and doctors, focusing not only on clinical management but also on prevention and social action for thalassaemia and haemoglobinopathies.

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Welcome messages

  • J. L. Vives-Corrons, Enerca IDIBAPS – Hospital Clínic
    Presentation (1,544 kb)
  • J. Waligora, European Commission-Rare Diseases
    Presentation (268kb)

European actions for haemoglobinopathies
(Chair: M. Angastiniotis & R. Stefanov)

  • M. Angastiniotis: Requirements for a reference thalassaemia centre
    Presentation (373kb)
  • B. Gulbis: Epidemiology and prevention of haemoglobinopathies in Europe
    Abstract (146kb) | Presentation (3,416kb)
  • A. Eleftheriou: European Policies contributing to health reforms
    Presentation (1,095kb)
  • C. Romeo: Cross barrier health: legal and ethical analysis performed by ENERCA
    Presentation (224kb)
  • P. Aguilar-Martínez: European educational resources on rare anaemias: the role of ENERCA
    Abstract (152kb) | Presentation (2,822kb)

Clinical management of thalassemia syndromes. Multidisciplinary care
(Chair: D. Loukopoulos & D. Konstantinov)

  • M. D. Cappellini: Pathophysiology and management of thalassaemia intermedia
    Abstract (142kb) | Presentation (985kb)
  • E. Voskaridou (C. Barbu): Endocrine consequences of iron overload
    Abstract (157kb) | Presentation (2,167kb)

Haemoglobinopathies and rare anaemias: current situation in Bulgaria
(Chair: M. Rangelova & C. Sotirelis)

  • V. Kaleva: Steps needed to move forward in Bulgaria A professional point of view
    Presentation (985kb)
  • R. Stefanov: Steps needed to move forward in Bulgaria. A public health point of view
    Presentation (1,421kb)
  • C. Sotirelis: Expert Patients’ Programme
    Presentation (684kb)

Rare anaemias not due to haemoglobinopathies
(Chair: H. Heimpel & J. Raynov)

  • C. Camaschella: Congenital defects of iron metabolism. A new diagnostic challenge
    Abstract (151kb) | Presentation (1,450kb)
  • H. Heimpel: Congenital dyserythropoietic anaemias (CDA). Current situation in Europe
    Abstract (174kb) | Presentation (1,624kb)
  • J. L. Vives-Corrons: Hereditary hemolytic anaemias: Membranopathies and enzyme defects
    Presentation (2,097kb)
  • G. Mihailov: Iron chelation in myelodysplastic syndromes
    Presentation (1,022kb)

Alternative management of severe haemoglobinopathies and other rare anaemias
(Chair: D. Loukopoulos & D. Konstantinov)

  • A. Hill: Recent advances in the management of Paroxystic Nocturnal Haemoglobinuria
    Abstract (145kb) | Presentation (1,423kb)
  • M. Montalembert: Clinical management of sickle-cell anaemia in children
    Presentation (3,221kb)
  • D. Pagliara: Bone Marrow Transplantation. Current situation
    Presentation (1,458kb)
  • D. Loukopoulos: Developing new therapies for thalassemia and HbS disease
    Abstract (155kb) | Presentation (1,457kb)

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